Thursday, July 1, 2010

Update

First of all, I want to send out a big "thank you" to everyone who has contacted me in some way or another to see if we are alright! :) It's been awhile, yes... once again. Honestly, here's my excuse: I've not only been in a general "funk" but I'm kind of in an "EB" funk right now. I'm just so frustrated with this horrible, stupid, unfair disease and frankly... I am trying everything I can to keep my mind off of it (which is impossible, by the way). But I know you guys are worried about Tripp, so I wanted to let you know what's been going on.

Last you heard, he had gone to the eye doctor and had one of his contacts changed out. Well, since then that same eye has been red, swollen, and watering constantly. So Tuesday of this week, we took him back to the eye doctor- this time KNOWING that no one was touching him unless he was under anesthesia. I made that very clear. So the doctor and I decided that the best option for him right now is to try the amniotic membrane. Ok, I will try to explain what's happening and how this will work.

Tripp's eyes are just like his skin. When his eyes itch and he rubs them, he causes a blister on his inner eyelid. The blister becomes a rough surface and takes a very long time to heal (if it even heals at all) just like the rest of his skin. So the blister then rubs on the eyeball every time he blinks or rubs his eyes. Well the contacts cover the iris (the brown part of his eye) but it doesn't cover the white part (sclera). So the contacts help him to be able to see and to actually be able to OPEN his eyes, but when the blister rubs on the white part of his eyeball, it is still painful and it can still cause a corneal abrasion. Which can also lead to eye infections and other things.

So the next step (and probably the ONLY other solution)... which is also temporary, is sewing an amniotic membrane to the inside of his eyelid so that it smoothes it out and it won't cause an abrasion on the cornea. They get this "amniotic membrane" from random moms who donate their amniotic sacs (PLEASE donate :) ... I didn't, but sure will with my next one). They freeze the membranes and use them for all sorts of things (I'm finding out). Supposedly it has done well in other EB children, though they don't know how long it will last- weeks, months...?? So it may be something that we have to do often, but if it helps even for a week... it will be worth it. And honestly, it may seem kind of weird, but I don't care WHO this "membrane" comes from--- if it gives Tripp ANY little bit of relief, it could come from Bill Clinton's dog's amniotic sac, I don't care!!

The surgery is scheduled for Wednesday, July 28th right now. But I kinda begged for it to "somehow" get pushed up. We went into the surgery Coordinator's office to schedule the surgery and I think the longer we stayed in there and she got to see Tripp, the more she tried to squeeze us in earlier! She said that he is already "over"booked, but she was going to do her best to see if she could get him two surgery rooms so that she could squeeze us in on July 7th. That would be awesome!! He's had so much trouble with his eyes lately, that I am so excited to give this a try. I'm praying that it will be (if anything) just a temporary fix. At least we will know that we have an option when his eyes get really bad like right now. I was only going to get them to do one eye, but yesterday he woke up with his GOOD eye swollen shut and didn't open it until 6pm last night. He must have rubbed the blister through the night. So while he's under anesthesia (which I'm not very excited about), I'm definitely going to get them to do both eyes. Poor man cannot even get two good days in a row. It's always something!!

Ok, so now for his skin... it has pretty much stayed the same all over his body. Not healing, but really not looking any worse. The heat is being really hard on him though. He is getting a few new ones here and there, more than in the winter. And he gets little "heat rashes," too that seem to itch him a lot. His worst areas right now are the backs of his thighs, his butt, and the sides of his little scrotum. Not only is his poor little bottom just HOT all the time, but all he wants is for us to hold him. And he's not walking or crawling (and honestly has no interest in learning) so that means he's constantly getting weight/pressure on those areas. Not to mention the pee/poop that's always there!! It's so sad because no matter how much I lube him down with aquaphor/desitin/whatever sometimes things get moved and get stuck. It's the saddest and most painful thing when I have to get a sore "unstuck" from his bandages. This child must have to highest pain tolerance in the world. I swear he can't be human- I know he's an angel on Earth.

He is SO good- and never ever ever ceases to AMAZE me. What a strong boy he is. God, if you are reading this... I'm not sure what I did to deserve one of your angels, but THANK YOU. He has changed my life. I am so grateful.

There is probably so much I'm forgetting to tell you, but it's been so long that I'm just trying to touch on the big-stuff :) Tripp pretty much can "mimic" anything we do:

He waves "bye-bye", he rolls his eyes, shakes his head yes and no, he "swims" (which is TOO precious, by the way... he moves his arms back and forth like he's swimming), he does the horsey sound (clicking his tongue), he claps his hands, nods his head and stomps his feet to the "If your happy and you know it" song. Anytime you say, "dance", he immediately starts shaking his head along with the rest of his body. He also knows the meaning to "clap your feet", "shake your butt", "wiggle your toes." If you say, "Who's a rotten boy?" He lifts one of his arms up as if he's saying "ME, ME." Really, I'm not kidding, he pretty much can perform anything we tell him to if you show him how to do it once. He's hilarious. It's amazing, actually. I can't believe how smart he is. Maybe because we are in his face all day!! He LOVES books and wants to turn the pages BY HIMSELF... and instead of using HIS finger to point to the pictures, he will grab OUR hand and use it to point to the pictures! Talk about ROTTEN! And STILL with his balls and his eggs, he ONLY wants the red and green, or the pink and green. And if you try to give him another color, he shakes his head "No, No." I am on a mission to get this all on video, but it's like he KNOWS I want him to perform.

Please keep little man in your prayers and I will let you know the "set" date of his surgery.

I am so sorry to hear Tripp's eyes are still giving him trouble. I am glad they might have a solution, even if temp to fit the problem and bring him some relief. Good to see an update from you. I am glad you are "ok" :) You, Tripp and Randy are in my prayers!!!!!!!!!!!! I dont even know you but I think you are the best mommy in the world.

thank you for updating us. you are super human and Tripp is lucky to have you. I hope you and Randy are finding time to connect. I will pray for that and for Tripp's surgery and complete healing. God bless your family.

Courtney, Thanks so much for the update. It was great to hear from you although I can fully understand that you don't feel like writing. Sorry, "the little knight" is still suffering with his eyes. Maybe the new procedure will bring him some relief! I love looking at his pictures because his smile just melts my heart. I'll keep my fingers crossed they will be able to do his surgery on the 7th. Waiting is hard but watching your child in pain probably feels almost unbearable at times. Take care of yourself. The love and strength you show is to be admired.

Glad to hear you guys are surviving. Sad to hear that Tripp's eyes are still so bad and that you are in all kinds of a "funk". I don't blame you, I just hate that you feel crappy. He is SOOOO smart, Courtney. Jonah isn't doing half that stuff. Brainiac is right! I hope you get it on video soon... that would be so hilarious. I'm especially interested in the clapping feet and the hand raising. FUNNY. Love you. No pressure at all to call... I was just getting worried about you. Talk to you WHENever. Hugs.

Thanks for updating and for being so honest about how you are doing as well. It is okay to be in a funk. Our feel-good-all-the-time culture says otherwise, but it is a normal, natural response to an intense life experience. We EB parents are dealing with a pretty intense life experience, and like you, I wouldn't have it any other way. God gave Tripp to you because he and Tripp BOTH knew what amazing care you would give him, and they would have it no other way as well. Blessings upon you, your husband, and your angel on earth.

This is a lovely post.You may feel in a funk, you may even be in a funk, but you sound GREAT!OF course this is one tiny window, but read your post like a stranger and I think you will find it easy to feel the happiness (and love) in your story.

Hey Court! I am so glad to hear that Tripp is hopefully going to get some relief for his eyes soon. We will pray for the July 7th date! Give that darling boy a big, albeit gentle, kiss from all of us in Alabama! We miss you and want you to know that we are ALWAYS thinking about you and your amazing family. Hello to your mom and dad, too! Love you!

I'm so sorry to hear about Tripp still having so much trouble with his eyes but hopefully the surgery will be the answer to his problems. Thanks so much for the update. My thoughts, love & prayers are with each of you. Tripp you are one handsome little boy whom I love dearly.

Hi Courtney: Thanks for the update. Hoping and praying that the surgery will give him some relief. It's amazing what they can do, isn't it? Extra prayers are coming your way. Give Tripp a big kiss for me. Love you guys. Love Leah's Nana